Good MAC Doctor Recommendations

Posted by chinasmom @chinasmom, Apr 7, 2017

I have been searching for either an infectious disease doctor or a pulmonary doctor in the St .Louis Missouri area to treat MAC. It’s exhausting work. I currently have pulmonary doctor with a prescription pad and an infectious disease student.
Please help if you know of a good one.
Becky

Liked by ling123

@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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BonnieWhite56……i know how shocking it is to have ones Dr get angry when told you want second opinion….. i was so upset , when this happened After i had gone to National Jewish Health with Dr Huitt …..I switched to a new pulmonologist locally. I no longer could trust the Dr who became upset.
Dr Huitt and other specialists,after no NTM grew to 3rd stage from 3 sputum cultures, and my CAT scan showed no signs of active infectio, said NOT to take the antibiotics but work on my GERD which was causing reflux of our local contaminated water into my lungs. Tdrell

@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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Hello Bonnie. I am so glad that you took the time to read from past threads. There is so much helpful information on this forum. If you learn anything that you have not seen here, I hope you will share it with us. This disease is so elusive and kind of new on the medical field’s radar that new things about it are constantly coming out. Would you feel comfortable sharing with us what your diagnosis is?

@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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Shocking and scary? @bonniewhite56, that just, excuse my verbology, pisses me off. Nothing more irritating, and dangerous, than bad doctors. Don’t get scared, get angry! That is unacceptably poor professional behavior, not to be tolerated.

Some doctors just have too big an ego to think for their patients and not take it personally.

@bonniewhite56

Hi. I’m new to the site and just secured an appointment at the Jacksonville location. Someone in my readings on here mentioned Dr. Leventhal. I actually asked to have a consult with him. If anyone on here saw him or anyone else they recommend to talk to I would appreciate your feedback. I’ve been diagnosed about a year ago and am going to Mayo for a 2nd opinion because I’m not confident with my current doctor. Thanks so so much for your input.

Bonnie

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@bonniewhite56, Bonnie, you hit the nail on the head “taking matters into your own hands’! As with any medical issues, YOU have to be your own best advocate. Do your due diligence. Research your illness and WHO would be the best to treat it.

Have diagnosis of MAC and bronchiectasis. Need local doctor in Tampa area to help getting through episodes. Any recommendations??

Hi @jengelage you may have noticed I moved your post to this existing thread on finding doctors in your location.

I wanted to highlight some information that @colleenyoung shared from other users @boomerexpert and @128128terry11t offered http://mayocl.in/2og8RBc
Boomer says:
“Use this link: https://www.ntminfo.org/patients/physician-referral-list”

Terry suggests:
“If you called Mayo or National Jewish, might they be willing to give you a name if there is no liability issue? When I went to National Jewish, they gave me names of experienced clinicians in my area.”

I also wanted to highlight what @windwalker said that you are your best advocate! Find the doctor who best fits your needs.

Hopefully this is helpful. Let us know who you find!

Thanks for info.

@jengelage

Have diagnosis of MAC and bronchiectasis. Need local doctor in Tampa area to help getting through episodes. Any recommendations??

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@jengelage Hello. I have a notebook at home with drs names in Tampa. I am out of town at the moment until next week. Try http://www.ntminfo.org to see a list of bonafide mac specialists. They are listed by state, then by area. Please get back to me if you still need help finding a dr.

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